This is what I want you to know (and didn’t say on TV)

This We Don't Talk About story was originally published in shortened form as 'I Feel Sorry For The Person Who Left Me This Note. They Clearly Don't Understand Disability' by The Huffington Post on 2 May 2016. You can read that version here. This is a longer, more complete version of Justine's story.

 

Justine Van Den Borne

Justine Van Den Borne made national news on The Project after her Facebook message to someone who left an abusive note on her windshield went viral. There have been more than 250,000 Facebook likes, 58,000+ shares, and 42,000+ comments so far. She is 41, the mother of Annabelle (19) and James (17), and is living with Secondary-Progressive Multiple Sclerosis.

We Don't Talk About_Justine Van Den Borne
We Don't Talk About_Justine Van Den Borne

Let me tell you what my MS is really like

A few days after I posted the note on Facebook on 10 November 2015, I wet myself in public.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don’t understand. I didn’t understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my MS diagnosis.

Everyone’s disease is different. We all have different stories. But we have many similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

They also don’t know how to react to my increasing disability.

Two months ago – after I was on The Project – I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn’t walk, I couldn’t move. I sat down on the grass and sobbed. I knew the heat was making it worse, and so I dragged myself to the nearest shade. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself. Because losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

But MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can’t feel my feet. That means I can’t wear shoes that don’t tie have a strap, because I don’t grip like a normal person and shoes just fall off. Last year I stepped on a pitchfork in the garden and ended up in hospital… that was the first time I felt anything in my foot for years.

My hands feel like I am wearing gloves. My fine motor skills aren’t what they used to be. I can’t even plait my daughter’s hair.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don’t use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When you saw me on The Project, I was in pain.

 

This is how it impacts my family and my future

My children, Annabelle and James, live at home. They are 19 and 17, and have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

It started with numbness in my hands and feet nine years ago. I ignored it, as you do. But then my neck and face went numb, so I went to my GP. My blood tests came back normal, so I was sent to a neurologist.

They suspected a brain tumour and ordered an MRI. The neurologist found no tumour: my brain and optic nerve were – and still are – fine. But they did find four massive lesions on my spine.

I was diagnosed with Relapsing-Remitting MS (RRMS), but after a while my neurologist changed my diagnosis to Secondary-Progressive MS (SPMS). SPMS does not have the relapses that RRMS. It just progresses over time.

All these years later I still only have those four lesions. But they are changing colour, indicating more white matter. That means more damage has occurred. I have weeks when my body stays the same, but it never lasts. I notice my progression. There is always something little going on.

I notice. It makes me think of my future.

Before my diagnosis, I feared the fate of the guy who played Superman – his brain still worked, but was trapped in his own body. That may be what MS means for me.

I am an only child. My parents worry about me. My mother helps me so much deal, and wonders what would happen to me – and my kids – if she were gone. In the normal scheme of things, I should be the one worrying about them. But they are confronting their daughter’s mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. But then again, I wouldn’t want to know unless we could treat or avoid it.

My son plays his cards close to his chest and I’m not sure what he thinks. He is always around to help me though, picking his sister up and taking her places now he can drive.

My daughter worries for me. She is like my shadow. We are always together.

I want my kids to be kids. But my MS has impacted their childhood. I don’t like to ask for their help, I don’t want to burden them. I want them to experience the freedom I had, growing up with parents who didn’t have MS.

Their father and I split up ten years ago, before I was diagnosed. Daryl is a fantastic dad and ex-husband. It took us a while, but I think we co-parent well.

I have been with Michael for the past nine years. He has been with me every step of the way with MS. But it has been hard for him. He knows what I deal with behind closed doors.

 

What I have lost – and gained – because of MS

I was made redundant at the end of 2012. I experienced a massive progression in my MS that year and some days I couldn’t walk without falling. My neurologist suggested I stop working, as I was only making the MS worse by trying to do more than I could. I now receive the disability pension. I am grateful for that, but it was not a choice I wanted to make. It was depressing; it felt like I was giving in to the disease.

But MS is makes things hard, and some things are no longer possible.

We have gone to Thailand as a family for the last couple of years, but the next trip will be the last time I can go. It is just too risky these days. I fell over last time and dislocated my finger, ending up in Bangkok Hospital. What if I hurt myself more seriously next time?

My MS progresses every year. Sometimes is just a little worse, and sometimes there is a step change.

I will have to learn to self-catheterise soon. The thought frightens me.

We just brought home a puppy, a Labrador called James. He is to be a companion dog for me. There are aid dogs for people with MS and Parkinson’s disease, but there is a long wait list. I am going to see if I can train James to pick up what I drop.

I still feel sorry for the person who wrote the note… They clearly don’t understand disability. But good things have come from it – there is greater awareness.

And I hope people read this. I hope it makes them think.

I think we all have to do our best to stay standing up, and this is my way.

I Feel Sorry For The Person Who Left Me This Note. They Clearly Don’t Understand Disability

This We Don't Talk About story was originally published by The Huffington Post on 2 May 2016. You can read it here. A longer, more complete version of Justine's story is published here.

 

We Don't Talk About_Justine Van Den Borne
We Don't Talk About_Justine Van Den Borne

I wet myself in public a few days after my Facebook message to the person who left a note on my car went viral.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don't understand. I didn't understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my diagnosis of Secondary Progressive Multiple Sclerosis.

Everyone's disease is different. We all have different stories, but we have similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

They also don't know how to react to my increasing disability.

Two months ago, I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn't walk, I couldn't move. I sat on the grass and sobbed. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself -- losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can't feel my feet. That means I can't wear shoes that don't tie or have a strap, because I don't grip like a normal person and shoes just fall off.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don't use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When I appeared on Channel Ten's 'The Project' to talk about the Facebook post, I was in pain.

This is how it impacts my family and my future.

My children, Annabelle and James, live at home. They have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

I have weeks when my body stays the same, but it never lasts. I notice my progression. It makes me think of my future.

I am an only child. My mother helps me a great deal, and worries what would happen to me -- and my kids -- if she were gone. In the normal scheme of things, I should be the one worrying about them, but she is confronting her daughter's mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. Then again, I wouldn't want to know unless we could treat or avoid it.

I want my kids to be kids. I don't like to ask for their help, I don't want to burden them. I want them to experience the freedom I had, growing up with parents who didn't have MS.

MS makes things hard, and some things are no longer possible. Sometimes it is just a little worse, and sometimes there is a steep change.

My bladder is getting worse. I will have to learn to self-catheterise soon. The thought frightens me.

I still feel sorry for the person who wrote the note. They clearly don't understand disability. But good things have come from it -- there is greater awareness.

And I hope people read this. I hope it makes them think.

Juggling MS, family and work: Priorities and possibilities

 

Mike Welsh

West Footscray, Victoria

Mike is a digital banking guru at ANZ Bank. English-born, he migrated to Australia with his partner, Kate, twelve years ago. They married in 2009 and have two young children, Lila and Ciarán. Mike was diagnosed with MS at the age of 31, and will soon turn 40. He became a National Advocate for MS Australia in March 2015. This is his story.

 

MS and genetics: Is it in the family?

I was diagnosed with MS at the age of 31, four and a bit years after moving from England to Australia. The diagnosis was a shock, but then again, it wasn’t. My mother, Diana, has MS. She was diagnosed when I was in my third year at uni, so must have been well into her 40s. I didn’t grow up with MS, but it has been there all of my adult life.

I was young, fit, and (I thought) healthy. I ate well, and I was active. I had just finished playing rugby, and I rode my bike to and from work every day. Kate and I worked long hours, and lived well.

And then, one night, shortly after getting home from work on my bike I lost the peripheral vision in my left eye. Kate called an ambulance, and I went to the hospital. I went through all the tests for heart attack, stroke etc, all very confusing for a young, fit person. My vision had come back quite quickly, long before I even got to hospital, so I was sent home after these tests and told to rest; it was a worrying episode. After a few months of being tired all the time, my Mum started to suspect it could be MS. And so I forced the issue with my GP who referred me to a neurologist, who thought my lack of vision was due to migraines not MS. I had a MRI and what do you know, they found the lesions.

MS is a nasty piece of work, but it depends on where you get your lesions. I think MS affects my vocabulary… sometimes when I'm speaking I can't seem to get out the word I want to say. I know the word, I can ‘see’ the word in my mind, but it's just out of reach, and I can't form it to say it. The word I ‘see’ is always yellow, by the way. This used to frustrate me no end. But now I just let someone fill in the word for me, and I say thank you and move on. One day soon I think I’m going to start experimenting with cue cards, probably in yellow, to see if it helps!

Although, in my view, the diagnosis of migraines missed the mark, I now get them quite frequently. They happen when I’m overdoing it, and am run down. For this reason, I can feel them coming on, sometimes hours before they arrive; I stop what I am doing and go to a dark, quiet room and meditate. Meditating helps.

But these are not everyday occurrences; day to day, it is the fatigue that gets me. I have learned to manage it, but it requires conscious effort. I limit my activities on the weekend and sleep during the middle of the day most Saturdays and Sundays. Ciarán is only 2, and so we take our naps at the same time. Again, I learned this from my mother – she naps frequently, and it helps her manage.

Seeing the way in which my mother lives with MS was – and is – a critical factor in how I manage my MS. Seeing others with MS, particularly if their disease is more advanced, can be scary. My mother means I have always a positive MS role model, for after 20 odd years she is still going well. She uses a walking stick, but she is still fully engaged with her family and her community. She lives her life as she chooses, including traveling from England to see her grandchildren every year.

MS is one of those things… It can be both a multiplier and a mask. You are always asking yourself ‘Are they just pins and needles, or is it my MS playing up? Is this just a headache, or is this an MS migraine?’. MS causes you to second guess yourself. You can slip into a negative frame of mind. At worst, you can use MS as an excuse, as something to hide behind when other things aren’t going well.

I consider myself to be lucky. I don't take any medication for MS. Eight years in, I look after myself. I avoid dairy, even changing the coffee I drink to make that easy day-to-day. This means chocolate is a no and I do miss Mars Bars and a cheeky caramel slice. I don’t really drink much, definitely not on ‘school days' because MS has changed my ability to bounce back. I have a fragile balance between feeling good and feeling bad, and alcohol tips my balance too easily. And critically, I make sure I exercise: riding to and from work religiously, rain, hail or shine (in fact, as with lots of people with MS, it’s the heat that’s the hardest to cope with. Give me the cold rain every day over the heat and that wind!)

These changes haven’t been difficult to make. And I get very frustrated with people who complain about their diets. I think ‘It is not that hard: make your choice and stick to it’. But then again, maybe I feel that way because for me it is not a choice. It is how I cope with MS. Just another example of how MS changes how one looks at the world.

Kate has a clinical approach towards my MS, which is helpful. She works in healthcare and understands what MS is. She is great at helping me with my diet and other lifestyle interventions. She is incredibly level-headed. Still, she hates the fact that I have it as it affects what we can do and so often things take longer then they should as I need to have a kip. I understand: I hate it too.

My younger brother Doug doesn’t have MS. We both moved away from home when we finished school in England – I moved to Scotland and, after a stint at uni, he went to Spain. Given the emerging linkages between MS, Vitamin D and sun exposure, I often joke that I went north to get MS (Scotland not being renowned for either sunshine or diet), and he went south to avoid it.

I haven’t asked my mother how she feels about my having MS. We talk a lot about how it's affecting us on any given week. MS is what it is, and there is no-one better to talk about with than another person who has it! Having said that, my mother, both through nature and nurture, has given me the most important thing needed to cope: resilience. She has a stubborn refusal to let MS dramatically affect her life, and I try to do the same.

Before Kate and I had kids, we did think about whether MS would pass to my children. Even though I am not aware of any research that suggests MS has been passed down through three generations, I suppose it is a possibility. MS is a new disease and the ability to diagnose MS wasn’t great until recently… Maybe there have been lots of families with three generations of people with MS, and we just didn’t know. But I am hopeful – I do not want my children to have MS.

Kate and I try to help our kids. We think about how our lifestyle choices might impact them, and we try to make choices that are in their best interests. We make sure they eat well, and get plenty of Vitamin D as they grow. Of course, this can be difficult in reality. Dairy is a well-known contributor to inflammation (which is such a key factor in MS) but it is also essential for growing kids. The same goes for Vitamin D. Low Vitamin D levels are considered a risk factor for MS, but of course high sun exposure comes with its own risks. So we try to find a balance – interventions that may be useful avoiding MS, while still making sure they get what they need for growing bodies.

 

What MS requires of our loved ones: Questions to ask

Our family is going through a period of change at the moment – at the end of 2015 Kate has just returned to work, and Lila is preparing to start school in the new year. I haven’t asked Kate directly how she feels about the fact that I have MS. I probably should. I know she is struggling because we have so much to do, and I can’t help as much as I would like. If I stay up late to do something around the house, I struggle to get up for work the next day.

With MS, we have to plan ahead, and I have limited capacity each day. For example, I divide my day up into three lots (morning, afternoon and evening), and I can 'do' stuff for any 2 of those 3 lots; 1 of them has to have some form of rest. That leaves me with less time than I would have if I didn’t have MS. So as a family we have to choose: either something doesn’t get done, or Kate picks up the slack. It is hard on her.

It has been six weeks so far, and I have started to notice the amount of work she was doing at home. We simply can’t get everything done, and I am not able to help as I would like. We are considering outsourcing some of the work (eg by hiring a cleaner). Although that is a financial decision we have to work out the value of the time we can have together as a family against the outlay.

Having MS means I make financial decisions differently than I otherwise would. And sometimes Kate and I are not on the same page. Actually, I think I drive her crazy. My primary goal is to pay off the mortgage, because if I have to stop working I don’t want us to have to deal with a mortgage. But focusing on that means I don’t want to do other things - the hot tub will have to wait! Still, we understand and respect each other’s opinions – we know we are both looking out for our family.

Living with someone with MS requires a certain amount of give and take, probably more give than take. There are days when Kate is obviously tired or when she has had a bad day. She needs some downtime, and often I can’t give it to her. I wish I had the capacity to give it to her, but I don’t. I can’t. I think (hope?) as the kids get older it might become easier.

There are some days I struggle at work. But I know if I can just get through the day, I can go to my home and family and I can rest. Kate enables this. She does so much for me, and for the family. On the days I come home shattered from work, she handles everything. I feel incredibly selfish, but she just gets on with it.

Using the example of the cleaner from earlier, being able to do that will enable me and, just as importantly, Kate, to keep working. I have questions about the NDIS – will cleaning services be available if I were to nominate staying at work as my MS goal? Because staying employed is so important to me. The confidence and self-worth that comes with employment is incredibly valuable... I think of employment as a ‘force field’ for me. I believe keeping people with MS in employment is a fundamental goal the NDIS can facilitate.

 

My hopes and fears: MS and employment

As I said before, I am one of the lucky ones. While I have a chronic degenerative disease, I have a relatively benign form. I work a full week. I am (as much as I can be) fully involved in family life. My balance is not affected and I can still ride my bike. I credit this to lifestyle choices and to my mother (and to that precious gift of resilience).

A decade ago, I worked long hard hours at the office. Kate was working too, and we would often leave for work or travel home together. It worked for us. And I had ambitions; I knew where I was going. But then MS happened. And those long hours weren’t possible anymore. That was psychologically very hard for me, as I equated my success with the hours I worked. When MS took those hours away I feared it would take away my success too.

It is still a source of fear – what will MS do to me and my ability to work? But I have a better handle on it these days. I know it is my ability, not simply the number of hours, that is valuable. I have accepted where I am in my career and the progress I continue to make, and I am happy with my achievements. I am successful, and I still have ambitions. I am just not aiming for the top of the tree anymore. Perhaps that has come with age and maturity, perhaps that has come from MS. Probably a combination of both.

ANZ is a very supportive organisation. What they have done for me is to enable me to fulfil my role at times when I am able. My employer demands quality performance outcomes and not time in the office. This means they get the best out of me.

I cannot overstate the importance of the support I get from ANZ. I ‘came out of the MS closet’ at work in 2015. Frankly, it was scary. I didn’t know the response I would get. But the support from management and colleagues has been enormously positive. MS is a part of who I am, and I realised that most colleagues had never known me without MS. It was heartening, as most responses were ‘I had no idea’, to which I replied ‘that is my point’. MS doesn’t change who I am. And I am grateful colleagues haven’t changed their expectations of me. But I am now able to be more open about my time. At the moment I have every second Thursday off, so I can be at home with the kids while Kate is at work.

I want to be the master of my own destiny, and retire when I choose. And I want to work for as long as I can. This insidious disease stops people from working, or makes them stop before they want to. I read that the majority of us stop within ten years. That means I have two years left before I hit the average time post-diagnosis when people stop work. But I don’t intend to stop, I don't want to stop: I will keep going as long as I can.

Who knows what the future will bring. Perhaps one day Kate will work full time and I will work part time and look after the kids. We shall see what the future brings.

That said, I am scared of working less. When I have time off, I struggle. That 'force field' seems to lose some of its strength. I worry that if I stop, I might let the disease in the door, so to speak. I don’t feel the need to nap at work during the week. I don’t really understand my psychology or why that is the case, I just know I am scared there is something in my work ethic keeping the MS fatigue at bay, and that if I were to work less I would need to sleep more.

 

Life with MS: Re-evaluating priorities

With MS, I asked myself what the best use of my time is. And I decided it is family and work. Everything else has to give. Of course, this is not unique to Kate and me – every family struggles to do it all. I just find that with MS in the mix, there is less room to manoeuvre. Everything is just that bit more difficult.

MS teaches you to prioritise and be efficient with your time. They are life skills we all need, and by god, they are worth having. It one of the best lessons I have learned.

MS has also made me a better manager at work. I am more empathetic, and I understand the importance of work-life balance for all employees.

I wouldn’t trade what I have for anything else. Yes, it can be shit, and I wish I had more certainty about my future and more capacity to help Kate. But I know my MS now, and I look for the benefits it brings to my life.

I genuinely feel happy that I have a life that allows more time at home with the kids. I don’t start work early as with MS I need the sleep. But if I didn’t have MS it's probable I would still be working long hours. This lifestyle change (enabled by my very supportive employer) means I see my children every morning. It means that I am a part of the daily family routine, and I love it.

I still don’t know when and how I will have the MS conversation with my kids. At what point do I begin to educate them about my health? About their grandmother’s health? About what it means for them? They are too young to comprehend now, but Lila may soon start to understand. They know I need to sleep, and that sometimes I just can't do something with them, they just don't know why yet. Figuring that out is the last piece of my MS puzzle.

I think those of us with MS like talking to others who have the disease. It helps us understand what we face. My mother and I always talk about it - I think she's glad that we're managing.

And that is why I became and Advocate for MS Australia and I am sharing my story.

 

Living with MND on the other side of the world

 

Frank Lyons

Rozelle, New South Wales

Frank is almost 63. He was diagnosed with Motor Neuron Disease (MND, or known outside of Australia as ALS) a year ago. Born in Scotland, he has been married to his childhood sweetheart Rae for 41 years. Frank can no longer speak well, and he emailed me his background before we met at his house. He now uses an iPad and app to communicate, facilitated by his wife.

 

Moving to Australia

Frank: I was born in Scotland in 1952, the eldest of five children. My sister moved to Australia in 1981, and my daughter in 2006. I have other Australian relatives from my great grandmother, who emigrated to Australia in 1925. And so I always wanted to come to Australia.

In 2007, Rae and I were sponsored to work in Australia. While we did not expect to stay permanently, we have been very happy living here. My daughter Ruth lives close by. But Scotland will always be home. My son still lives there, and we returned last year for his wedding. But now, with MND, we are planning a final trip there in March 2016.

 

Being diagnosed with MND

Frank: Not a lot of people know about MND in Australia. It is a little better understood in Scotland, where prominent football players have been diagnosed with the disease.

My symptoms appeared in late 2013, when I first experienced a slurring of my speech and had difficulty swallowing. Soon afterwards a neurologist told me that I had had a minor stroke. I saw a speech therapist, but after several months there was no improvement and I started to lose weight. I then saw a new doctor, and he referred me to the Brain and Mind Institute at the University of Sydney. 

Frank and I are sitting on the couch, and Rae sits on a free floating chair. Frank is propped up in the corner of the couch, his iPad on his lap. He is positioned to look at both Rae and I, but he can choose to gaze at the spectacular view of Parramatta River. He does so as Rae starts to speak.

Rae: I knew Frank was ill. We went to see the Archibald Prize in August 2014, and I could see by his stance – his posture looked curved – there was something wrong. I thought it might be Parkinson’s disease or Multiple Sclerosis… I never thought it could be MND. It was a shock.

Frank: We do not know what causes MND, but I think stress played a role. The final six months of 2013 were overwhelming. I found out my brother had cancer, and Rae and I returned to the United Kingdom in October 2013 to support him – a year before I was diagnosed and around the time I started showing symptoms. Also in the same month I found out that I would be retrenched before Christmas. My brother then passed away in December. I was, however, then lucky to start with my current and very supportive employer, in April 2014.

When told the diagnosis in September 2014, we were about to return to Scotland for my son’s wedding. My doctor later admitted that he nearly didn’t tell me the diagnosis before we left. But confirming the diagnosis gave me the chance to tell my children. It was such a struggle to have to tell them. We did not tell anyone else until after the wedding, but many friends could see that there was something wrong.

After the diagnosis, the only thing I could think of was that 90 per cent of people with MND last between two and five years. I felt like giving up. I told my wife that ‘we are going home’. I suppose I took the same view as my brother had when it became clear that his chemotherapy was not working: he stopped treatment to spend his final time with his family.

 

Adapting to life with MND

I have had consistent and helpful support in the year since my diagnosis. The family is no stranger to neurological disease and movement disorders – my daughter-in-law Hannah has Fibromyalgia, my ex brother-in-law has Multiple Sclerosis, and I have two cousins and an aunt with Cerebral Palsy. And I was given clear support and advice on how to live with MND at the Brain and Mind Institute.

But I struggled to listen. I was in shock; maybe I still am. My wife and I have never experienced any major illness, and there is nothing I can do to get back to how I was. I am challenged by the necessity of adapting to a new lifestyle and taking new medications. Sometimes I agree to try a new drug or a new way, but then I give up. The deterioration of my speech, combined with my difficulty swallowing, lack of appetite and large weight loss, at times make me question why am I doing this. Nothing will actually make me better.

Frank is emotional, and this makes it more difficult for me to understand. Much of this interview is in Frank’s own words, but words emailed to me before I met him. I have used these words to fill in the story he told me in person.

At this point, I decide to ask their thoughts on the Australian healthcare system, which they are now intimately acquainted with.

Frank: I see my neurologist every three months, and I have a clinical nurse Margie on call if we need her. She is always available, and has great knowledge and empathy. I have never been admitted to hospital, I have always been a day patient.

Rae: It has been hard navigating a new system – it is not what we are used to, and we have no background knowledge. We have found the Australian system to be confusing, especially the difference between public and private. We have private healthcare, but we often feel that we pay more for no extra care or service. We have learned to call and ask for help. Looking back, I think we left it too long before we asked for help, that was the result of our confusion understanding who to talk to and what the process was.

Now we receive support from palliative care, community care and occupational therapist, with speech therapist, dietician, respiratory care through the MND clinic. At first, we always had different people coming to our home to help, and there was no consistency. Now we have a permanent person, who comes once a month, and it is better.

Frank: I have technology to help me speak, which is good, but it is not the same as talking. This just depresses me at times. I take many medications, including Rilutek, which is the main medication for MND (and in Australia is available through the Pharmaceutical Benefits Scheme). I also take medication to manage my saliva management, hypertension and blood flow.

I have a PEG tube (I later looked this up. PEG stands for Percutaneous endoscopic gastrostomy, and refers to a feeding tube in the abdomen, used when oral feeding is no longer an option) as I can no longer swallow. I had lost a great deal of weight, and cannot eat much more than soft eggs, soup and liquefied food. The new protein I use in my PEG has enabled me to put some weight back on.

I have a B Pap machine to assist my breathing at night and an electric pillow lifter, as I can no longer lie down. Rae and I no longer sleep in the same bed together... there is simply not enough space for Rae to sleep comfortably.

Rae: I think Frank could eat a little more than he does, but he chooses not to. It is psychological. He chooses not to use the thickener that is added to water to help him swallow. I know he stays hydrated through the PEG tube… but I miss the company at the dinner table. Being able to try new food and cooking together was a real pleasure. It is another part of our life that we have lost.

Frank: MND is more variable than I thought possible, and no one else experiences it in the same way. For me, it is hard to eat. I don’t want to. It is depressing.

The first time I couldn’t swallow it was very scary. It happened in the middle of the night, and I could barely breathe. I don’t like going to restaurants any more either. I can’t eat the food – I’ve had to spit it out in the past – and I have no appetite. And I can no longer enjoy a Guinness or a gin and tonic.

Not being able to speak is exhausting. I can use the iPad, but it is not the same. MND NSW has free communications apps to help people communicate. The artificial voice sounds robotic, but if you upgrade and pay you can choose the accent that speaks, although there is not a Scottish one! But it helps me at work, and in this interview. I can pre-program questions and comments.

Rae: I miss Frank’s voice. We could have recorded Frank’s voice and programmed that into the app, but now we can’t. When he still had his voice we didn’t know what we would need.

We have engaged with MND NSW. We attended an information evening, but at that stage we both felt we were not ready to face up to things.

We are usually always together when we leave the house. We no longer walk, we drive everywhere, and we have a disability parking permit. Frank has to wear a collar to keep his neck up, but that creates its own problems, as it restricts his breathing and swallowing so he sees no reason to go out. It is a catch-22. We found a collar with a new, experimental design from a university in the United Kingdom, but it has not been able to get enough funding to be made yet.

Frank: It affects the family as well. My daughter, Ruth, is very strong, very independent. She doesn’t say much about MND, or the future. She talks about how to manage on a day to day basis, but none of us talk about the future. She has other stresses in her life as well. Her partner’s mother has cancer, and he is living overseas to care for his mother at the moment. Ruth has a lot to deal with.

Rae: Frank was feeling very low earlier this year. Depressed, and maybe angry. He has never been the type of man to show his anger or argue back before… although now he can’t physically argue back anyway. Francis and our daughter-in-law Hannah flew in from Scotland to surprise Frank in July. It was beautiful.

 

Planning for the future

Frank: People expect me to be in a wheelchair, but I still work part time. My employer has been fantastic in many ways. They pay for a return cab each day so I can make it to the office. When I was first diagnosed I emailed everyone in the office. One colleague told me that she had a relative with MND. In hindsight, working for this employer has been a good outcome.

But even though I have this support, I will be retiring given my condition.

People have a negative perception of MND. I am normally a positive person: you can’t just sit in the dark the entire time. But there are dark days. I get frustrated. I think that is selfish. But living with MND is hard. I have no motivation to do anything, and although I know that is so hard on Rae, I struggle to change. They say only one per cent of people with MND live for ten years.

My life is at an end, but it has been a good one.

I ask if their roles have changed since MND entered their lives. Rae laughs.

Rae: As far as home goes, I do everything. I know Frank keeps most of his energy for work, but I get very frustrated when he does not even make a cup of tea. Frank could make an effort to do more, and people tell him to try and plan, but Frank does not recognise the need, he thinks ‘why bother’.

I do tend to nag him but call it ‘tough love’. I try to motivate him. But he has said many times ‘I just don’t want to be here’. Before he got the PEG fitted he wasn’t eating and we had a constant battle of wills. I once asked him if he was deliberately not eating as I knew he just wanted to fade away. His reply was an emphatic ‘no!’.

People have dropped away. All of a sudden, they don’t call anymore. Frank can’t talk anymore. And there are other ways, like email and text message. I am a member of a women’s fitness club and I am very fortunate to have made friends, which is a great outlet and they are all very supportive. This helps me immensely.

This is clearly distressing for both Rae and Frank. This brings them both close to tears, and I admit, myself as well.

Frank: Rae and I, we had planned to retire and travel. But I just want to go home now, to Scotland. Rae wants to stay in Australia.

Frank stops at this point. Perhaps he has nothing to say, or perhaps there is nothing to say for a man whose body – but not mind – is failing him.

Rae: We don’t talk about the future. There is no cure, so we focus on managing each day. But we have to look at the dark side. We need to talk about a carer’s plan, our future lifestyle, and Frank’s wishes.

I was offered carer’s support, but I am not ready. Perhaps in the future I will be.

Frank: I do not want to think about what will happen when I get worse. Even going home to Scotland is a challenge, I have to consider whether I should give up the lifestyle I have in Australia, even though it is expensive. 

My attitude puts stress on my wife and daughter, I always put myself first. While I have had to change my lifestyle to assist me, and I have the support to continue to do that, it is still a challenge. I have a terminal illness for which there is, at this stage, no cure. I have to deal with it, but I am trying to do it my own way.

The continuing decline is the biggest challenge. Rae and I adapt, but sometimes I struggle. Physically, I know I am what I am, but emotionally, I just want to go back to the way I was.

I want to go back to who I was.

Frank and Rae hug me when I leave. They do not have many friends here as most are back in Scotland. I think they enjoyed my company, even though I am a stranger.

Coming to terms with Parkinson’s disease

 

Rob Miller

Burwood, New South Wales

Rob was diagnosed with Parkinsons disease in 2010, when he was 49. He is now 54 and adapting to life with the disease. He has been married to Philippa since 1988 and they have three boys. When he opens the door and welcomes me into his house, I notice that he displays two signs of Parkinsons disease a rigid walk and masked expression.

 

The thing about Parkinsons disease

The thing about Parkinson’s disease is that you are unlikely to be aware that you have the disease for a long time, after the neuro-degeneration has well and truly begun. Not that anything can be done to halt the disease. The thief in the night!

Occasionally my left arm would shake during exercise. I mentioned this to a friend and he mentioned it to his wife, who happened to be a doctor. She sent me straight to a neurologist.

I had no idea that the the neurologist would tell me I have Parkinson’s disease. It was a shock. I was hoping there was nothing wrong, or at least, it was something less sinister.

I went to the morning appointment alone, and I was tying my shoelaces at the end of the examination when the neurologist told me. It was an ‘oh’ moment. But I continued about my day, it didn’t occur to me to change my schedule. I’m a lone wolf in that way, I just do what needs to be done. The news didn’t start to hit home until that afternoon. I felt confronted. Frightened. Alone.

Philippa knew about the appointment, but had to work that day. I hadn’t told my children. I’d simply put the appointment in my diary and turned up when I was supposed to. Philippa came to subsequent appointments. At those appointments we always talked about controlling the symptoms, but never about my prognosis.

Parkinson’s disease is a movement disorder and is linked to greatly reduced levels of dopamine being produced by the brain. As there are no tests to definitively diagnose the disease, other alternative diagnoses need to be ruled out. This can be difficult, as some symptoms can be confused with being tired or ageing.

I do take drugs, but the more they are used over time the less effective they become. I take a dopamine agonist Pramipexole which mimics the effect of dopamine produced by my brain. One of the potential side effects is compulsive behaviour, including hyper sexuality. I haven’t experienced that, unfortunately (he said, laughing), but my neurologist still asks whether I have every time I see him. I also take Levodopa, an artificial dopamine.

 

The impact on my work

I told two close friends, Andrew and Chris, before anyone else outside the immediate family. I just blurted it out at dinner one night, about a month after the diagnosis. Their reactions were quite touching. They were shocked, of course, as well as supportive. But the basis or our friendship is our friendship – not the fact that I have Parkinson’s Disease. I think they are looking out for me without being obvious. They judge how and when to bring it up, and they take their cue from me as to whether I want to talk about it or not. I tend not to bring it up, it is just the way I am. I think this is something for me to deal with and no one else.

I then informed my fellow Principals at the firm of my diagnosis a short time later, and even made a joke that the Parkinson’s would play havoc with my putting. My news, and my attempt at humour, were met with a respectful silence. I think it is because of the nature of the disease… people don’t understand. If you say you have terminal cancer, well, everyone knows that doesn’t end happily. But a neurological disease? Few people know what it means.

The first concrete decision I came to was to work less. I was a patent attorney. It was a perfect career for me, a marriage between writing, engineering and law. But I began to experience difficulties performing my work to the standard I was used to, and it was clear that work would only become more difficult.

I moved to a four-day work week, and there was a definite winding down. I became selective about the clients I dealt with and the projects I worked on. I took Wednesdays off, and it was a joyous day I looked forward to each week. I went for walks, I played golf, I explored parts of Sydney that I hadn’t seen. It was great fun, and quite rewarding and therapeutic.

A little over a year ago, I decided to cease work altogether. I went from four days to none at all. I realised that the time had come. It was becoming difficult to concentrate at work, and sometimes clients and colleagues would ask if I was alright. It was perfectly clear that I wasn’t capable of doing the work I once had, and this caused me a great deal of anxiety.

And so I left. I went cold turkey; I chose not to keep up contact. I think that once you have left, you have left.

I threw myself into renovating our beach house. The renovations had been going on for a while, but I became more engaged in the process. It felt like I was on holidays. But in the months after that, when everyone went back to school and to work that feeling ended. My wife and I agreed that it was my turn to do the household chores and all that she had done before. I took on a more domestic role, and I even took a few cooking lessons.

But as this year has worn on, I have begun to miss the adult world. I’ve taken up playing bridge. It is an intellectual game, and I like that. Exercise is my constant companion, and I enjoy the occasional trip away with a buddy. But keeping myself occupied and engaged is an issue that is increasingly demanding my attention. I know I have to keep the intellectual side up, and playing bridge is not enough. Next year I might take up a short course of study, maybe something in the humanities.

 

The impact on my family

I decided that work was the only thing that would change, everything else would continue as normal. I have three boys. Telling them was a bit haphazard, actually, but the diagnosis wasn’t hidden away. We just didn’t talk about it often. The boys kept their feelings to themselves. We did start a running joke at the dinner table. I would say ‘pull my arm’ when it was tingling or feeling wrong, and they would.

But my approach drives my wife crazy. At the beginning it was difficult for her. She wanted to talk to her friends about it – I think that was part of her way of coping. But I preferred to keep it to myself while I was still processing what it meant. Still, the world didn’t collapse around us, and we continue on. I see a Stoic practicality in her reaction, and her Scottish Presbyterian heritage means she makes the best of it and cracks on.

That has been my take on it as well. I think life is business as usual. I get on with it – I take the medication, I exercise, and I do what needs to be done. But I have to recognise that there are some things that I can no longer do, and some things that take me longer to do. Writing by hand is now very difficult, as are doing up buttons and tying my shoelaces. Basically, my fine motor skills are shot to pieces. Still, I try to be as normal as I would otherwise be. I can still drive, I can even still ski.

 

How I feel now

I experience fatigue. Some days are not as good as other days, and I have to take a day to recover. For me, I think exercise is the key. I work with a personal trainer, who I count as a good friend, three days a week. It is integral to the way I manage this disease and it is vital to controlling my symptoms. If I don’t exercise I get stuck in a Parkinson’s spiral of stalling and freezing up.

Things take me longer these days. I am always the last one out the door. And I am slow at the household chores – peeling potatoes, folding the washing. These are mundane things, and it is frustrating that I can’t get through such simple tasks.

My wife has engaged a bit with Parkinson’s Australia. There is a bit of literature around the house, but I never read it. She finds the disease very frustrating. I think it must be frustrating for the partners of people with diseases like Parkinson’s. No one can be understanding and accommodating to another person’s needs and changes to their health all of the time.

I’ve avoided being involved in any Parkinson’s organisations. I don’t feel that I need support groups, I think I am functioning fairly normally. If I went, I would meet people whose condition is more advanced than mine, and I wouldn’t like that. I see that every time I go to the hospital clinic. The fact that there is a service out there is great, but it isn’t for everyone. I suppose there is an element of denial in that: I don’t want that future for myself, and I don’t want to be reminded that it can happen.

But maybe I am missing out. I recently made a discovery: fat-barrelled pens are easier for me to write with. That is apparently well known by the occupational therapists in the Parkinson’s community, but I didn’t know.

I haven’t bothered looking at the medical research either. It would be easy – Michael J. Fox has Parkinson’s disease and his Foundation’s website has information galore. But I don’t want to spend my days looking up the next miracle drug. It is probably part of my coping mechanism; I’m just not interested in knowing a lot about it.

I have a few friends with other chronic disease. A lady down the road has MS. Her disease has progressed much further than mine in terms of mobility, which is difficult for me to see. But she gives me a hug every time she sees me. We have an affinity, of a sort. Our brains are alike.

 

What I will do next

I am in a fortunate situation. I am reasonably well-off, and the change to my abilities is slow.

But I do notice incremental things. I am more and more clumsy. I haven’t really explained my condition to people, but word gets around. I find that people are supportive at social events. If I need to I ask for help – for example, I can’t carry more than one drink in each hand anymore – people are accommodating. They take their cue from me. In the main, I haven’t noticed that people treat me differently. But maybe they do in subtle ways, and I am just not aware. I don’t blame them – Parkinson’s is not a well-understood disease. In that way it is similar to Chronic Fatigue and Multiple Sclerosis.

My current goal is to support my youngest finish school and fly solo. 2016 will be his final year at school, and I intend to be there for him as much as he wants and needs.

After that, I’d like to spend chunks of time at the beach house. It is restorative and therapeutic. I can rest there. But my wife has a new, demanding job. She is enjoying the challenge, and has no intention of cutting back. Nor do I expect her to. We have yet to completely reconcile the two positions – where I am retired and she is still engaged in the workforce.

I’m sympathetic to how a disease like Parkinson’s impacts on partners. How do they cope? Do they feel cheated, as if they didn’t get what they signed up for? A disease like Parkinson’s must impact them. I am trying to understand, and I would like to talk more about it to understand more deeply.

My imperatives remain the same: to exercise, to find intellectual engagement, to engage with the adult world. But the future is unknown. I often joke that I haven’t planned beyond tomorrow.

I know I am hedging around the ultimate question – how does my life with this disease end up? My neurologist is helpful in this regard. He reminds me that the disease is slow moving, and I should worry more about co-morbidities, which are more likely to do me in. Deep down, I carry that thought with me.

There is something in me that says to spend more time at the beach house or travel sooner rather than later, to enjoy this time while my health is this good. For I know it may get harder. But I also know there are people out there with far worse conditions than I have. Even though I don’t think I have been let off lightly, I know it could be worse.

And so I try to remain upbeat. I don’t feel sorry for myself, and I don’t think I am depressed. The most common emotions I feel are anxiety and frustration. I don’t want to lose what I still have, like the ability to drive and to ski. If I were to lose them, I would become melancholy, and maybe I would need treatment. But I will meet those challenges when and if they come. They do not occupy my thoughts everyday.

This talking has helped my thinking a bit. It reminds me of the role of talking. I’m looking forward to reading, and maybe sharing, it.

The ravages of early onset Alzheimer’s disease

 

Jurg Kunzle

Wollstonecraft, New South Wales

Jurg is 65 years old. Born in Switzerland, he still has a Swiss accent and European mannerisms. He was diagnosed with early onset Alzheimer’s disease in early 2013. I interview him with his wife Marion by his side. Marion is able to fill in the blanks when he is no longer able to. The couple are friends of my extended family and I notice that Jurg – always fluent in English – finds it more difficult to express himself than I remember as a child. Words, especially in English, no longer come easily.

 

Jurg: I was retrenched in 2000 after twelve years with the same company. This was a great disruption to my life, and began a four-year period where I changed jobs twice and was unemployed for two years.

Marion: I saw the signs of Alzheimer’s back then. Jurg was looking for jobs and doing phone interviews, but he started to have trouble answering questions and requests for information on the phone. At the time, I suggested putting a card with the basic details near the phone. My mother had Alzheimer’s disease, and I knew the signs. All I could think was ‘this can’t be happening to me twice’. In late 2012 I spoke to my GP about it, and then booked Jurg in for an appointment with a specialist.

Jurg: It was very difficult for me to admit I needed to go to a doctor. But I knew there was something wrong with my short term memory. I think the stress from unemployment made it worse. And when I did go to the specialist, I couldn’t do the memory test. When the doctor asked me where I was, I couldn’t say, aside from knowing that I was in Sydney.

Marion: It was a difficult time. When the doctor asked whether Jurg had thought about suicide, he said ‘yes’. I was deeply shocked. When asked what had stopped him, he said ‘family’.

I notice that Jurg is agitated, he does not like this topic. It brings up painful emotions, and he does not have the words to express himself as clearly as he would like. As Jurg struggles to explain, his speech reverts to more European speech patterns. Marion suggests words at various intervals.

Jurg: We told the children straight away, Berenice and Danielle. Danielle, the youngest, is more sensitive and took it hardest.

Marion: Jurg could no longer work. But we had debt. For financial reasons, we had to downsize. We have been in this apartment for two years. We were very lucky, as we had a great deal of help from our friends. One couple even temporarily covered our deposit so we could buy this apartment as we were in the process of selling our old home.

Jurg: I worry about Danielle, my biological daughter. I don’t have the inheritance I thought I would have to give her. I am on welfare... I received the Disability Support Pension until I was 65, and now I receive the Age Pension. It is a lot less.

Marion: I have had to take over the household finances – something Jurg always took care of. We had to spend all of our resources before we we became eligible for welfare payments. But I was rejected for the Carer Allowance, I do not understand why. This makes our financial situation more difficult than it would otherwise be. We have gone through the whole process, we have also set up our wills and Power of Attorney.

Jurg: I understand what my path will be. I was thrown from a car accident into a tree when I was 25 and almost died. I still have a scar all the way up my chest. So I have thought about the ‘why’ of life. And now years later I am here, in Australia.

I ask whether Jurg has thought about Danielle inheriting Alzheimer’s disease. Jurg says no, but Marion responds.

Marion: My mother and grandmother both had Alzheimer’s disease. I worry what will happen to me. My mother died from complications from the disease – she stopped communicating with people, and then she fell and broke her hip. With Alzheimer's disease, routine becomes so important.

Jurg nods his head vigorously.

Jurg: At this stage, I only know what is routine. I can walk to my post box, which I have had since 1982. And I can still meet Marion at her work. I know where it is and how to get there, one suburb away.

Marion: He knows to sit in the white chairs near my work and wait for me. But there have been problems. He got lost one day. I was desperate when I couldn’t find him. It turned out that he was in the wrong place in the right building, but he thought he was in a different suburb. I have lost 10kgs due to the stress.

Jurg (directly to Marion): I want to help. I can still do the small tasks. I buy the apples.

Marion (laughing): Yes, and the raspberry jam. You forget, and have now bought us four jars of raspberry jam.

Jurg (addressing me once again): I used to swim. That was my time. But now I can only go if someone drives me there. And I no longer drive... There was an incident.

Marion: One time Jurg caused a car accident and didn’t tell me. Another time he drove past me because he didn’t recognise me. He hasn’t driven for three years, and he officially lost his licence this year.

Jurg is engaged in this topic. He is gesturing wildly with his hands, and sitting up straighter. He wants me to understand what he is losing and has already lost.

Jurg: The world is closing in on me. I don’t even know when I am not here. It is the reason I don’t talk that much. And when I get lost, I don’t ask people for help. What would I ask? At those times, I don’t know what I need to ask.

Marion: Jurg doesn’t remember the most recent episode. When he got lost in Chatswood.

Jurg: I got lost. Why can’t I remember that?

Marion: There is anger and frustration when he can’t remember, when he can’t express himself, when there is no routine. And he has no patience. Our grandchildren are 9 and 6. They are boisterous and exuberant, but Jurg gets frustrated and angry with them. These days, other people mean the chance for misunderstandings and confusion.

Jurg: Sometimes I have to walk away, I have to leave the room. The doctor told me to walk it off when I get angry, and so now that is how I calm down.

Marion: Jurg has trouble with his maintaining his emotions, especially anger. He tripped someone over in a shopping centre because they were in the way. When he was driving, there was road rage.

Jurg: I don’t have any patience. Now I go prefer to go out in the morning, when there is no one in my way.

Jurg laughs at this. Humour is one way to cope. I decide to ask if Jurg takes anti-depressants. He seems uncomfortable, but says yes. Marion tells me she takes the same antidepressant, at half Jurg’s dose. Both look ashamed. I tell them I also take the same antidepressant, and Jurg thinks this is hilarious. We laugh and high-five: antidepressants are a part of chronic disease life.

Jurg: I understand what my path will be. But it has taken me this long to realise what has happened. I hope for a miracle drug, but that is years away. But I would take anything, I don’t have a problem with trial drugs. And if it comes to the end… well, I won’t know, I will have a great time! The important thing is to have a good time getting to the end. I am positive, though. Maybe there will be a new drug. Anyway, my father died at 52 – I can say I beat him!

Marion: This year, and for the first time in 15 years, we are going back to Switzerland. When I took over the finances, I tried to close Jurg’s old credit card. And I found out there were 650,000 frequent flyer points that hadn’t been used. Jurg had forgotten about them! It was a lovely surprise. It means we can take this last holiday. We are going to New York, London, Paris, Barcelona and Zurich.

Jurg: It is the right time for us to go. I want to see my brother, who I haven’t seen in ten years.

I ask Marion how she is planning to look after Jurg. Jurg is silent, and seems resigned to the fact that this is necessary.

Marion (hesitantly): I might need to pin a sign to his shirt with our current hotel and phone number.

Jurg interrupts, suggesting that the problem will be solved if he wears his old dog tag. He seems excited about this. Marion tries to explain this won’t help, as while it has his name it doesn’t identify where he is staying or how to get in touch with her. Jurg protests then falls silent; I am not sure he understands.

Marion: I worry about losing him in the men’s room. What if he leaves by a different exit?

I ask if they have asked for help from Alzheimer’s Australia or another organisation.

Jurg: That is my next step. At the moment I am figuring it out, but I probably need more information.

Marion: Anglicare picks Jurg up twice a week, on Wednesdays and Thursdays. Sometimes the group goes on excursions, like to the Modern Art Gallery, but mostly they spend the day in a community centre. They do paper crafts and keep each other company.

Jurg shows me his paper craft displayed nearby. He is proud, but I am saddened. I had assumed it was the work of one of his grandchildren.

Jurg: Ten years ago I wouldn’t have gone to this type of thing. I am an atheist. But I like to help. I am physically able, unlike the others that go. So I can help, helping is still something that I can do. I help those with physical disabilities, and I help the Reverend. They are good people, we talk about what has happened. Now I even listen to his sermons.

Jurg appears happy, even peaceful, as he talks about the sermons. They are a constant, a routine, and they bring this atheist comfort in a world dissolving around him.

Marion: Friday is Jurg’s day alone. He does the vacuuming, and he still walks to the train station to wait for me.

Jurg: I want to help. I am doing everything the best I can. I am up, I am positive – I don’t want to kill myself. If this is what it has to be, then I am doing this. I am carrying on and I am enjoying life. With Alzheimer’s disease, people think that ‘this is it, I am useless’. But that is negative, and the negative, it kills you. It is what it is. If you lose something, it is gone. Forget about it, move on. Be now, and enjoy. I will do everything I can, as long as I am here. I want to do the right thing. I hope to help others who read this. Anyone can talk to me, and I will tell them that has happened, and that I am still happy. This interview is for the others, the ones who have what I have.

Throughout the interview Jurg has been wearing gloves, even though we are inside. Like many with neurological diseases, he suffers from cold extremities, particularly the hands. He removes the glove to clasp my hand as I leave, and he is shocked (and pleased) to find my hands are as cold as his. We compare our hands to Marion – she is the only one in the room without a neurological disease. Her hands are warm. Jurg hugs me and promises to send me a photo from Zurich.